On My Soapbox

Readers of my e-newsletter have let me know how much they enjoy “On My Soapbox,” my monthly feature – rant – focusing on some aspect of raising a child with autism that pushes my buttons, either up or down. For those who have not yet subscribed, here’s a taste of what we’ve discussed over the course of this year. If you’d like to join our newsletter community, click here.

On My Soapbox, May-June 2007
Life in the No Put-Down Zone

Bullying at school is without question one of the more gut-wrenching problem we face as parents of children who are different. It requires a top-down, zero-tolerance position. Such was the case at our superlative elementary school, Capitol Hill. It was a school offering much to admire, not the least of which was the administration’s ferociously enforced policy declaring the school a No Put Down Zone. Our principal believed in dealing with instances of unkindness promptly and in a proactive rather than punitive manner whenever possible. During his third grade year, Bryce reported that a group of older children had harassed him on the bus, mocking his special interests, calling him a ‘kindergartner,’ telling where he could and couldn’t sit. The whole group was hauled into the principal’s office immediately.

Mr. Jones emailed me later that morning, saying that most of the students had admitted to harassing behavior, and that calls were in to parents. “Each of the students has been given a letter that must be signed by their parents and returned to school,” he told me. “ I spoke to each student and read the letter to them. We talked about being kind and helpful. We also talked clearly about boundaries of behavior and harassment.”

One student wrote very sincere note of apology. I decided to thank him for his show of character, and wrote back to him: “It takes great courage to admit that we have made a mistake. But it is important to know that even when the mistake looks huge, there are still things we can do to put matters right again. Every day is a new chance to start over. It’s clear to me that you are well on your way to being a fine young man. Bryce appreciates and accepts your apology and would be happy to be your friend.”

The teacher later told me that my note had meant the world to this boy, and that he had slept with it next to his bed for weeks. What had started as an ugly incident of childhood cruelty ended in innumerable lessons for everyone involved. A nine-year-old learned something about actions resulting in consequences, as well as something about the nature of forgiveness. I learned that a few moments spent extending a hand in kindness rather than merely reprimand can become a life-changing event for a young person. I like to think he felt the ripple effect of our exchange long after punitive response would have faded from memory.

On My Soapbox, April 2007
What’s it gonna take?

I was speaking (preaching, as one friend fondly calls it) at an autism conference in the wonderful city of Omaha when the Centers for Disease Control released its newest estimates: autism now affects one in every 150 children. Of course, the conference was abuzz about it, and my phone lit up with messages: have you heard the CDC report? Have you heard?

There I was, surrounded — enveloped! – by several hundred people who cared desperately about this piece of news. But for two days, no matter how many times I stabbed that hotel room remote, hop-scotching tirelessly around the news channels – any channel – all I found was wall-to-wall coverage of the death of Anna Nicole Smith.

I hope I never become insensitive to the untimely death of another human being, especially one purported even by her critics to be a good mother. And certainly my heart goes out to a five-month-old baby who at best is going to grow up motherless, and at worst, passed around like some media football. But is it wrong for me to wish for even a fraction of that level of shock, anguish, curiosity, speculation and chatter to be directed our way? Is our news so much less compelling? Not captivating enough that an insidious neurological hijacker of childhoods has quintupled its rate of attack in just a decade? (When my son was identified with autism in 1995, we were told the rate of incidence was 1 in 750.)

What will it take for this information to become interesting enough to the general public to warrant comprehensive and ongoing action? Pray it will be before this staggeringly large new group ages out of the public school system, and all our fellow citizens who think we are spending too much on special education will get a look at what a bargain it would have been compared to the cost of lifelong adult assistance.

On My Soapbox, February-March 2007
Carrot and Stick in My Hometown

An innovative elementary school disabilities awareness program stands in sharp contrast to a local official’s deplorable view of special education students.

Imagine my delight when one recent day I opened the morning newspaper to find that the elementary school from which I graduated going on 40 years ago had sponsored a highly hands-on disabilities awareness day called “Come Walk in My Shoes.” Students moved through a variety of experiences simulating physical challenges as well as language difficulties and ‘invisible’ learning disabilities – like autism.

To live the challenge of sensory dysfunction, students were given deskwork to perform while being assaulted with over-bright light, loud white noise, constant tactile irritation (tickling from a feather) and overpowering ‘fragrance’ from someone’s perfume. Teachers gently pointed out that for students with autism, this sensory overload is not an experiment that ends after a minute – it is their life.

The program, created by special education professionals and therapists with the aim of realism, will travel to other school within the district. It fills me with great hope and even excitement to know that youngsters whose age is still measured in single digits will begin to understand the challenges of their peers with autism. They will be part the first generation ever to grow up viewing autism as something other than a veil of mystery or outright tragedy. The energy in that thought alone is exhilarating.

Read the article Empathy lesson puts students in shoes of disabled here.

And we are going to need that energy, still. The very same newspaper but a few weeks earlier had brought us the disgusting, demoralizing story of a meeting of our educational service district board in which a long-time board member had characterized special education students as ‘a bunch of slabs – slows, lows and belows.’ Quite naturally, this remark was met with shock – the ESD spends about 45% of its budget on special education – and the board chairman offered this member a chance to retract his statement. His response: “These are the facts.”

I got three letters that day asking me to run for public office. I will never do that because I do not have that ‘politic’ quality that would allow me to listen to this kind of garbage without speaking my mind in very unprintable terms. That’s my kid – and yours – he’s talking about.

However, I choose not to dignify this man’s disgraceful remarks with much of a response. As you can imagine, he has already been flambéed in the court of public opinion and by his peers, not to mention the newspapers. It’s a better use of my energy to keep doing what I do, encouraging and inspiring the positive in you as parents and professionals and our kids … albeit doing it with a bit of melancholy underpinning that lets us know we still have far to go.

On My Soapbox, January 2007
“Test” is a four-letter word

One soapbox from which I will never come down is the one from which I loudly condemn “standardized” testing as it applies to students with ASDs. I can’t count the number of times I have challenged everything from classroom quizzes to psychological testing on behalf of my son when I could plainly see that the format of the test, not the information sought, was a barrier to accurate assessment.

New research by Dr. Meredyth Goldberg Edelson of Willamette University here in Oregon supports my individual experience. In examining 215 studies going back 70 years, she found that many claims of low IQ in autism were without empirical support. Researchers using testing measures inappropriate for children with autism, such as timed or verbal tests, made assumptions about intelligence based on their inability to get results from the child.

Click here to read Steven Carter’s article about Dr. Goldberg Edelson’s findings. It will make a difference in your ability to advocate for your child. I’ve just concluded my own effort to have our school district qualify their psychological testing that identified Bryce’s intelligence as ‘borderline.’ This was the result of one test given on one day by one examiner who had no prior experience or relationship with Bryce. The results flew in the face of numerous teachers who, after working with him day and day out, characterized him as “very intelligent” and slammed the test results as “wildly inaccurate.” The district re-evaluated the results and allowed that the IQ score was disproportionately affected by his slower-than-average processing speed – not an indicator of intelligence – and provided me with a letter stating that his performance on six of eight subtests was well above that, and that the low overall IQ score was ‘misleading.’

Always question testing methodology if you feel it does not accurately reflect your child or student’s abilities, particularly assessments written in ridiculous language or assuming prior knowledge. My blood pressure went through the stratosphere last year when a frustrated special education teacher told me that the state math assessments “played into every weakness my students have.” One small example: a math probability question for first-quarter seventh graders began with “John throws a fair 6-sided die.” Students were not allowed to ask for help of any kind, even with defining such an obscure term. Shall we take a wide survey and determine how many 12-year-olds, neuro-typical or with ASDs, know what a “fair 6-sided die” is? Was it a math test, a vocabulary test, or a test of gaming terminology? Always question testing methodology if you feel it does not accurately reflect your child or student’s abilities.